Yes, I am a Special Needs Parent

This is the first in a series of posts called “Yes, I am A Special Needs Parent” from special needs parents of all stripes. The idea for it was born after special needs parents came together at BlogHer for a mini conference. It’s meant to illuminate the different experiences that parents of special needs kids have and the struggles and joys we face. If you are interested in being part of the monthly series, please email Kate Canterbury at theguavaliciouslife at gmail dot com.

A couple of months ago at BlogHer, the must attend session for me was the special needs mini conference. When I mentioned this to friends so many people said to me “I didn’t know you had a special needs kid” that I joked I should write a post about it. After attending the conference I realized that it was more than just a post from me on my blog. That it should be a series of posts about the experiences of parents. Because while there are so many amazing voices of advocacy out there on the internet, there are also so many of us going through the highs and lows quietly.

When I sat down to write my own post though, I struggled with what to say. I have written publicly about it just a few times before but it’s always hard. I feel like special needs are just part of who the girls are and who I am. It feels like something that I should keep to myself. Or maybe it’s just something I want to keep to myself. The thoughts, fears, and struggles of parenting often overwhelm me often and the online world feels like an escape from all of that. A place where my life is imperfect only in funny ways. In pictures everything looks wonderful.

And I wonder if that is the reality that I will remember. Years from now when hopefully we have worked our way through these issues will I remember only the good times and the fun moments that we take the time to photograph and document. I hope so. Because those photographs are what I want our lives to be. They are the lifeboats for me, the talismans I hold on to keep myself going. To remind myself that there are good moments, moments when everything is perfect and just like I always dreamed it would be.

If life was a giant game of password and there was only one thing I could say to people about my own experience as a special needs parent, the word I would use would be intense. I have joked to my husband that living with the girls is like living with a terrorist. You’re constantly on edge not knowing when the next outburst will happen. And you never quite know what caused it. I feel like I am tiptoeing through a minefield at times, hoping that I can keep everything just so so that the peace is kept and we can get through the meal, get dressed, get in the car, get through a movie, etc without an explosion.

This intensity of everyday living leaves very little left of me for anything else. In the past year, I’ve gained ten pounds, watched friendships slip away from me because I have nothing left to give to them, and had my relationship with my family come close to dissolving. And everything becomes magnified. The small slights of parenthood take on a much greater significance than they should. I can spend hours worrying about a passing comment at pickup and analyze a non birthday invite for months. I study the pictures of the walls of my daughters’ classroom looking for clues to their progress, comparing them to their classmates. The casual approach I took to milestones their first few years is long gone. Now I am constantly looking for boxes to check, things that I can point to as a plus.

Then there is the upside of intensity. The small milestones take on so much more significance. The first time my daughter looked out the window and told me she saw a cloud that looked like a dragon, I started crying. And as hard as these struggles have been on my marriage they have also bonded my husband and I together. Family has become the four of us. I still hope for the day when our life is like the pictures I take. More than anything I want to see my kids free of their struggles. But for now, I live for the cloud moments.

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About The Author

Julia Roberts

Julia Roberts is founder of Support for Special Needs and has been a regular contributor since its inception in May 2010. A mom to two kids with special needs, she didn't want other parents to feel what is the often isolating world of raising a child (or two!) with disabilities. Her kids had kidney transplants at the age of eight and will need liver transplants in the future as a result of ARPKD/CHF. They both have vision disorders and learning disabilities.